Philip C. (Romania & USA)

Personal experiences of living with dementia

Carmen’s journey

My wife’s name is Carmen. She was born and educated in Romania and was once a political prisoner for six months because her sister escaped the country. I am American/Romanian and opened a business in Romania in 1992; Carmen and I met in Romania in 1996 and we were married in 1999. After arranging for Carmen’s immigration status in the states, she decided to pursue a career in the healthcare industry. Despite speaking very little English at first, she pursued this course of study and graduated with a 3.85 average. She was in her early forties at this time. By the time she was 45, she began forgetting if she had finished charts for patients, administered shots or even had taken blood-pressures correctly. Every neurologist we went to said it was stress and depression and prescribed medications as such.

Believing that her father had died of black lung disease, we did not pursue any other course of action. It was not until age 46 that we had cognitive testing done. The diagnosis was FTD but interestingly enough she did not have the symptoms of this disease. Insurance in the states would not cover any of the advanced testing such as PET Scans or Genetic Testing. It was at this point we decided to pay ourselves for the Genetic Test and rule this out as her older sister was experiencing the same symptoms. What a surprise it was when the test came back positive; she was carrying one of the mutated Alzheimer’s genes and did not even know it. We did not find out that her father and aunt had actually died from this disease in their early 50’s until a chance meeting with a Romanian physician in 2009 that had treated her father in the early 70’s. As is true in many countries, inclusive of the USA, the disease is not talked about and is treated as a ‘big shame’ for the families experiencing it. This is of course absurd and something needs to be done in educational advocacy.

Carmen was quickly let go from her job as a healthcare professional. Since she was still active and able to work, we began a small homecare business and Carmen worked as a homecare specialist until the mid-part of 2009. No longer able to keep track of things or drive without difficulty, we thought it was time to curtail her activities. As her spouse, I sold my two small businesses during the economic downturn and became a fulltime caregiver since the mid-part of 2009. Indeed, my life’s journey gave us the time to spend with each other during these critical and stressful years.

We have survived these years, but not without difficulty. Carmen (nor I) no longer carry health insurance because of her condition driving up the costs beyond our budget. She was not able to qualify for any Alzheimer’s Trials because of her age; now that she qualifies in age, she does not qualify in the cognitive score area. We are though blessed to be part of the DIAN (Dominant Inherent Alzheimer’s Network) study. It is a true ‘Catch 22’ situation. We barely make ends meet and sometimes do not. Many early onset families have lost everything. The hole for us keeps getting deeper and larger but we still consider ourselves blessed. The saddening part is seeing a once vibrant woman who spoke six languages, graduate with a 3.85 average from her professional education and build a new life from scratch no longer able to communicate or move around her own house without getting lost.

From a caregiving standpoint; the journey has been one of love mixed with a lot of stress, doubt and longing. Love for my wife; stress of living each day; doubt of myself each day in fulfilling her needs and yes, even longing for the times past. Life keeps moving on though and we must be proactive each and every day.

We are one of many families struggling with Younger Onset Alzheimer’s. We are one of many families in the USA that have no money for to pay for care but too much money to qualify for any low-income benefits. We are too young to retire but too old to find other jobs after our loved ones are taken away from us. We have no help, no support and most of all, no understanding. People are afraid and therefore shun us. The lack of understanding on the public’s part, puts our loved ones not only in jeopardy, but opens them up to be prey of every heartless, cunning person out there. Because of these reasons, we decided to make drastic steps.

We have now moved back to Romania because the Romanian Social-Care system is more advanced than the USA. I do need to emphasize that the states has excellent medical care but lacks many social programs. The Romanian Alzheimer’s Society has provided a world of information and help. My wife is now happy and comfortable. Although we may not have the total physical comforts we experience in the USA; her social needs are fulfilled and her cognition has seemed to improve. Although Romania may not have the medical equipment we have in the states, the Romanian doctors are the best clinicians in the world and have helped to provide her with a comfortable environment.

Programs need to be all encompassing; not only for research, but for social environment. We as the caregivers, who love and care for our afflicted spouses are at the most risk and will lose the most if the whole system is not looked at. This disease is a world problem and not a national problem. We can all benefit from each other’s experience and by listening to each other as this disease knows no creed, colour or race.